A few days ago, I was listening to
some songs on my Kindle in an attempt to find something to sing with the Capps
Family Band at our nursing home gigs. I listened to Patsy Cline, Emmylou
Harris, Ray Price, Jim Reeves…and the list goes on. Eventually, I went out of
YouTube and decided to go to bed.
After I was ready for bed, I woke up
my Kindle and clicked on the Book tab. I heard the intro to the Johnny Cash
version of “Ring of Fire” with its unmistakable mariachi horns. The music
stopped when I opened the book I’d been reading. The book? Ring of Fire by Brad Taylor.
Some might call that a coincidence,
but my goose bumps classified the experience as more “weird” than “coincidental.”
It seemed it was a message of some kind, but I didn’t have a clue as to what it
could possibly mean.
So if we think of love circled with
a fiery ring, I believe you could say that nothing could penetrate that ring to
destroy the all-consuming love within its circle. However you look at it, fire
in the song is symbolic. Fire has many symbolic meanings, and I found the one
that could mean something to me: Issues you are consumed by—a strong passion or
prolonged obsession. Regardless of that stalker-esque phrase, I choose to
relate it to my passion for being an Alzheimer’s advocate.
I contacted the Alzheimer’s
Association soon after Jim was diagnosed with an Alzheimer’s type of dementia.
They connected me to a support group. Both the local chapter and the national
Alzheimer’s Association sent newsletters. Through the newsletters, I learned
about a walk in our hometown known then as the “Memory Walk.” Jim and I
registered for the walk and on walk day discovered we were the only ones from
our town. The next year, I became an Alzheimer’s volunteer and coordinated the
walk.
When my daughter-in-law and I tried
to get corporate sponsors, we realized that people didn’t know much about
Alzheimer’s. They often referred to it as “old timers” disease. They thought
age caused it and it just happened to elderly people. No big deal—just a part of
growing old. The first priority was to educate them that Alzheimer’s was a
degenerative brain disease.
I went to Washington, DC, for the
Alzheimer’s Forum for the first time in 2001. By then, Jim had been in
long-term care for a year. We went to ask for $1 billion for Alzheimer’s
research and for legislation to help the families dealing with Alzheimer’s. It
didn’t take long for me to find out that most senators and representatives didn’t
know much more about Alzheimer’s disease than the folks back home. After much persuasive
talk, we got a tiny fraction of our lofty goal. This pattern was repeated year
after year. Sometimes we gained a small amount, other times we held steady, but
a few times our funding was decreased.
A lot of things have changed since
my first trip to DC. As I look forward to my 19th trip next week, I
know we will meet with legislators who know exactly what Alzheimer’s is and how
devastating it is to the families and to our government. Our senators and
representatives are important partners in the fight to end Alzheimer’s.
Yes, we’ve won many battles, but now
we need to win the war. Current research funding for Alzheimer’s is beyond our
wildest dreams of nineteen years ago. The National Alzheimer’s Plan was passed
in 2012 to find an effective treatment or cure by 2025. It seemed like we had
plenty of time to meet our goals, but time has gone by with promising
treatments falling short of the target.
We must fund successful research and break through the ring of fire that
separates Alzheimer’s disease from a cure. In the meantime, we need to surround persons with dementia and their care partners with a circle of love and caring.
Before Johnny Cash recorded “Ring of
Fire,” he had a dream of the mariachi horns. He made his dream come true by
taking action. Well, I have dreams too, and I plan to take action at the
Alzheimer’s Advocacy Forum on April 2.
Copyright © March 2019 by L.S.
Fisher
#ENDALZ
1 comment:
Thanks for your passionate fire and all that you do, Linda! Best of luck in DC. Go get 'em!
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